Monday, March 1, 2010

Our road to an apraxia diagnosis

Speech has always been Payton's biggest delay. She is a rockstar when it comes to gross motor ... but speech, not so much. It breaks my heart.

Payton received speech therapy services through the county beginning at around 9 months of age. She continued with that until September 2008 when she was 2 years 7 months, at which point she aged out and began preschool through the county and privately.

In April 2009, we pulled her out of private preschool and replaced it with private speech therapy. Our concerns about her speech delay were growing ... as did the gap between her expressive and receptive speech. Since that time ... and since starting her on gingko biloba ... her speech has come far. But she is still struggling.

During her time in speech therapy, I have asked about apraxia ... only to have it swept under the rug. I have always kept it in the back of my mind ... along with the slight possibility that she may have a submucous cleft palate, as evidenced during her T&A awhile ago.

I guess when they say things happen for a reason ... it is true. I was heartbroken when our old speech therapist left, but in hindsight -- it was a blessing. She was young and had not picked up on the fact that Payton has apraxia.

And that is a problem.

After posting a video on my blog of Payton talking, I heard from a few blog readers that are SLPs -- they wanted to know if Payton had been evaluated for apraxia.

Had she been evaluated for apraxia? Uhhh ... no?

Here are the comments I received from one of the SLPs that has specializes in treating kids with apraxia ...

Her errors seem apraxic to me.

--the unusual sound substitutions like "dyedye" for "byebye" when she can say /b/ sounds for words like "baby" which is harder to say with 2 different vowels than bye-bye

--the way she simplifies syllables and doesn't always include both/all consonants/syllables in words (e.g. "Duh/Dora" at first then adding syllable after practicing, saying "Duhduh"/Dora -- apraxic characteristic to add /d/ like in front of word whereas most children might say "Doyuh" or "Dowuh" for Dora

--the oral groping and inconsistency with words like "Zoe", "chips", "shoes", and "blue"

--the addition of syllables at times like "mapurple/purple", "bobo/boat"

--inconsistent vowel productions -- although most were pretty close, there are still some that aren't precise

--overall difficulty imitating words

Ideas for you ...

--When working on a one-syllable word, like 'fish', hold out the /f/ sound ffffffffffff then 'ish' rather than saying the consonant sound more than once like fuhfuhfuh ish because she is hearing that as a lot of sounds to sequence together when there are really just 3 in f i sh. Does that make sense?

--When working on a two-syllable word, if she is getting the first syllable like 'ha' for 'happy', say 'pee' then go back to 'ha+ppy'. This technique has been shown to work with kids with apraxia over and over again. It's like working backwards. They get so stuck on the first syllable or anticipating the 2nd one that they can't produce both correctly. Another example would be a word like 'bunny' if she can say 'buh' work on 'knee' and point to your knee and say 'Say bunny' (she tries it). 'Say nee' (she tries it). 'Say Buh-nee.' (she tries it) 'Bunny.'

--Take words/sounds/syllables she says well and find other words with those sounds/syllables to practice and focus on saying these for practice. For example, 'bye-bye, baby, bubble, Bible --see the pattern? same consonant with different vowels? Then try words like "mama, mommy, money, maybe' with different vowels/consonants over time...

--As far as her leaving off sounds at the ends of words, the way i work on this is practicing the word as two syllables (e.g. mil+k) with a ton of emphasis on the k at the end. We sometimes even pat our lap or the table as we say the end sound. Will/can she imitate sounds by themselves, not the letters but the sounds they make if you say 'Say 'kuh''?

I would love to hear Payton imitate you saying consonant-vowel combinations below to see if she differs with different vowels...

may
my
mo
moo
me
maaaa
mah
muh
mih
meh

pay
pie
po
poo
pee
paaaa
pah
puh
pih
peh

bay
bye
bow
boo
bee
baaaa
bah
buh
bih
beh

kay
kye
ko
koo
key
kaaaa
kah
kuh
kih
keh

day
dye
doe
doo
ee
daaaa
dah
duh
dih
deh

So then I sent the SLP this video of Payton saying the sounds she suggested ...

And she said, "I've only watched 1/3 and I'm convinced. APRAXIA APRAXIA APRAXIA."

Awesome.

To be honest ... I just cried. I felt like I failed Payton. I was angry that her speech therapist hadn't addressed the issue when I asked. And I felt like I failed her some more.

As soon as I was done crying, I went into fight mode. I googled and googled some more. I found that the best way to tackle apraxia is through use of PROMPT therapy. Our new speech therapist is not trained in PROMPT, however we are having her continue therapy with Payton to approach it from all angles, so to speak.

I found a local therapy center that specializes in PROMPT. They performed an observation/evaluation of Payton and confirmed that she has apraxia after doing an apraxia specific test. We are currently waiting to get start dates at this therapy center and we also will be having an extensive evaluation done at the clinic founded by Libby Kumin ... I'm really excited for that!

And ... just to be sure that she does not have a submucous cleft, we have an appointment at a craniofacial clinic. She will be evaulated by several specialists, all in the same appointment ... I'm excited for that too!

So yeah ... I had my meltdown concerning the apraxia diagnosis ... and I moved into fight mode. I have noticed Payton's speech moving along, so I feel confident we will get there.

27 comments:

I know the feeling about guilt over not fighting enough. PJ's biggest delay is speech, I finally was able to get him speech, started maybe 5 months ago. I don't see much improvement, and he's supposed to start school in September. I don't know what to do. :o(

Max has an (unofficial) dx of apraxia. It stinks. He is 8 1/2 years old but can barely talk. I still have faith in him. His speech has come leaps and bounds since he was 4 or 5 though. He does have several words he can now say but it is still VERY limited. He can copy sounds, usually. He used to say jut one sound for any sound you tried to get him to copy. His SLP works with him pretty hard.

Good luck at all those appointments. Payton will get there, just in her own time.

Ok, first of all, I am just having a hard time getting passed how adorable she is. I mean, really, do you just wanna hug and kiss her every minute? I wish you lived nearby so I could meet you and your cute kids. Way to go mom on getting a diagnosis. I think she is doing so well at just being willing to repeat all of those words. :)

way to go mom on continuing to figure things out and getting the apraxia diagnosis - so lucky that the slps are reading your blog, too :) this is how i feel with whitney's hearing... one dr. flat out told me her canals are clear, her ears are fine and after waiting a long time to get into another dr. - she had glue like fluid in both ears! unfortunately her tubes fell out after only about 2-4 months so we are having surgery again on march 9th to put in "t-tubes"... speaking of surgery, how did everything go yesterday for nika? payton is adorable, by the way... hope all is well with nika :)

Thanks for sharing all this incredibly useful info, Bethany! There's something to say about mother's intuition (never second guess yourself, go with that gut feeling). It's the one excuse we have to always be "RIGHT".....after all, we are "MOMS"......we know are children best:) BTW, don't be so hard on yourself, you didn't let Payton down, just look at her, you are such an awesome mommy!! Now go fight that fight!!

My Mason (Age 1) had his speech evaluation through the county a couple of weeks ago and they mentioned the benefits of PROMPT therapy but said that she had not been trained in it. I am curious where you found a local therapy center that specialized in PROMPT. Good luck with everyhting - I am convinced you will be able to defeat Apraxia!

Kristin ... I asked around on our local DS listserv and people had recommendations for me. I also obtained a list of certified therapists in my area directly from the PROMPT Institute ... I think I linked to it in my post -- there is a spot on their website to find people in your area or to email them to get a list ... that is what I had to do.

Bethany, first, Chicky is such a beautiful child! I watched the video and have been smiling from the beginning. Thank you so much for posting this - I have asked the same about our Sam as I am leaning towards an Apraxia diagnosis as well. Sam was also diagnosed with a submucal cleft palate just weeks ago so I think we are headed down the same path with you.

Again, thank you for posting this info - I am going to insist on getting Sam tested.

First of all, she is cute as pie! Secondly, good for you for following your intuition. Hard news to hear, but it sounds like you are on the right path to getting the help your sweet little girl needs. Thank you for educating the rest of us on this diagnosis.

Osiyyah's ST is trained in PROMPT and he benefits from it SOOOO much! I've wondered if he has apraxia, but the previous ST we saw didn't think so. But, know how VISUALLY oriented he is and how much PROMPT helps him say sounds/words, makes me wonder even more. You've motivated me to ask his ST, since she will be very willing to look into it, I'm sure.

Little T has been in ST since she came home from China. She will be 4 in April and she isn't talking. Babble, yes, talking no. I asked our ped about apraxia and her comment was "I don't think so" and that was that. Nice huh? So, after having her hearing checked I decided to bring her to a private SLP to have her evaluated and guess what...Verbal Apraxia! So like you I researched the heck out of it, started her on some fish oils and got her into some private ST. She now has this 3x a week. Twice through the county system and once in private. As soon as I finish fighting with the insurance company we'll bump up the private ST to 2x a week.

Always trust your mommy instinct. I kept wondering what was wrong with my son, starting at about a year and a half. No one agreed until nearly a year later. We went to three SLPs and finally got an answer of CAS. Let me tell you, in just under a year, we can finally understand our son, and if we can't... there are ways to get him to help us figure it out. I wish you all the best in your apraxia journey.

Just popped over to your blog from No Hands But Ours. My 7 year old son has apraxia and it was a battle to get the diagnosis! I, like you had that mother's intuition!!! I want to encourage you that my 7 year old didn't start speech until almost 3 years old and at age 3.5 couldn't say his name (Elijah) and said MaMa and DaDa. He talks pretty well now! Do lots of research, use fish oils! I'm sure your daughter will do great!!!!

what a frustrating road this has been for you! I'm glad you finally have an answer and can now, hopefully find the right therapist!

I found it interesting that one of the comments from the SLP said something about the unusual sound substitutions like "dyedye" for "byebye" when she can say /b/ sounds for words like "baby" - Kayla has some substitutions like that - she'll say 'dirday' for 'birthday' even though she can pronounce the 'b' in a lot of other words; and 'dandaid' for 'bandaid.' She can pronounce the 'f' in fish/face/phone/fire etc...even the number FOUR, but turn that for in to forK and she says "Sork"...

I just found your blog. Great blog! And all of your children are adorable! I wanted to comment, b/c we had a similar instance with speech therapy. My son started speech at 22 mos. b/c he made only two sounds but seemed to understand alot more! We went to just about every doctor there was and noone suggested apraxia. I loved our speech therapists and also was so sad when she left when he was almost three. I found a new (highly recommended private place) that immediately told me he had apraxia. I was so glad and mad at the same time. How could he have been in speech for over a year and I asked over and over if it could be apraxia and they told me no no no. He is making huge strides with his therapist now. We go 4 days a week and have been doing so for 6 mos. They use prompts and Kaufman. Apraxia is just not that understood by enough SLP's out there. I am so grateful to the ones who do understand it and can help our angels!

Just found your blog and I want to say thank you. Even though our daughter is only 23 mos and came home from Kazakhstan just 7 months ago, my Mommy intuition tells me that she has apraxia (she can only say "mom/mama" and "da" at 23 mos. She also has other motor coordination and sensory problems. She's been in speech therapy for 3 mos now and has made no progress. I'm going to insist that they test for this now.

Thank you so much for this post. I stumbled across it when I did a search for "apraxia blog". My 2.5 year old is in speech therapy, and my mommy intuition tells me we're dealing with apraxia. Everyone keeps telling me he's too young to diagnose, which is frustrating. I'm in Northern VA, so was excited to see the mention of Loyola's program - I had no idea it existed. Will definitely be contacting them.

What a wonderful share!!! Thank you. Have you looked at the new Apple apps from SpeakinMotion? They are gearing new apps toward children. Check out their facebook page for more information. I've heard great reviews!! Good luck!

I have to get my two cents in....Bethany and all those other parents out there who feel guilty about not getting a diagnosis sooner, not knowing what to do, knowing what needs to be done but not being able to access services for your child etc etc. Apraxia is so misunderstood by so many people. And so are the treatment options. I have made some videos on the topic. They do have my company logo on them, but they were created for educational purposes to get the word out and save a few parents that awful feeling that so many of you have already expressed. (If the links don't work, just cut and paste directly into your browser)